Advancing patient-centered research practices in a pragmatic patient-level randomized clinical trial: A thematic analysis of stakeholder engagement in Emergency Medicine Palliative Care Access (EMPallA).

Background: Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee (SAC) recommendations were implemented throughout the Emergency Medicine Palliative Care Access (EMPallA) trial.

What's in This For You? What's in This For Me?: A Win-Win Perspective of Involving Study Advisory Committee Members in Palliative Care Research.

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members.

Multi-Sector Assessment and Client-Perception of Social Need at Long-Term Follow-Up of a Group-Randomized Trial of Community-Engaged Collaborative Care for Adults with Depression.

Understanding client perceptions of need for underlying social determinant support may improve services for depression care. This secondary analysis examines perceptions of "social needs" related to housing and employment, financial, and legal (EFL) concerns among individuals with depression. Data were analyzed from Community Partners in Care, a randomized comparative effectiveness trial of multi-sector collaborative care for depression among a sample of people who were predominantly racial/ethnic minorities and low-income.

Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression: A Longitudinal, Mixed-Method Examination.

The long-term course of depression is not well-understood among minority women. We assessed depression trajectory, barriers to depression care, and life difficulties among minority women accessing health and social service programs as part of the Community Partners in Care study. Data include surveys ( N = 339) and interviews ( n = 58) administered at 3-year follow-up with African American and Latina women with improved versus persistent depression.

Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study.

Background: Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings.

Objectives: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement.

Engaging LGBTQ Communities in Community-Partnered Participatory Research: Lessons from the Resilience Against Depression Disparities Study.

Background: The Resilience Against Depression Disparities (RADD), a community partnered, randomized comparative effectiveness study, aimed to address mental health in Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning (LGBTQ) racial/ethnic populations in New Orleans and Los Angeles.

Objectives: To describe engagement methods, lessons learned, and recommendations in engaging LGBTQ individuals and agencies throughout the RADD study.

Methods: RADD used a community partnered participatory research framework to engage LGBTQ community members and agencies.

Engaging Community and Academic Partners to Explore Adolescent Emotional Well-Being.

In an under-resourced area of the South Bay of Los Angeles, partnerships were formed between community advocates with extensive research experience, less experienced academic investigators, and an urban public high school without partnered research experience. This article outlines the process of developing these partnerships through a community-academic research conference addressing a priority area identified by the local community to define and understand the importance and relevance of adolescent emotional well-being. Teen participants from the high school identified support from the community as the most crucial ingredient for achieving adolescent emotional well-being.

Engaging Community Networks to Improve Depression Services: A Cluster-Randomized Trial of a Community Engagement and Planning Intervention.

This paper explores the effects of a group-randomized controlled trial, Community Partners in Care (CPIC), on the development of interagency networks for collaborative depression care improvement between a community engagement and planning (CEP) intervention and a resources for services (RS) intervention that provided the same content solely via technical assistance to individual programs. Both interventions consisted of a diverse set of service agencies, including health, mental health, substance abuse treatment, social services, and community-trusted organizations such as churches and parks and recreation centers. Participants in the community councils for the CEP intervention reflected a range of agency leaders, staff, and other stakeholders.

Resilience Against Depression Disparities (RADD): a protocol for a randomised comparative effectiveness trial for depression among predominantly low-income, racial/ethnic, sexual and gender minorities.

Introduction: Depression is the leading cause of adult disability and common among sexual and gender minority (SGM) adults. The current study builds on findings showing the effectiveness of depression quality improvement (QI) and delivery of cognitive behavioural therapy (CBT) skills provided by community health workers in reducing depression. Depression QI approaches across healthcare and social/community services in safety-net settings have shown improvements in mental wellness, mental health quality of life and depression over 12 months.

Community Partnership in Precision Medicine: Themes from a Community Engagement Conference.

Background: Patient and community engagement in under-resourced communities is a key issue for precision medicine research. We report proceedings from a community-academic partnered conference in Los Angeles to promote community understanding of precision medicine and generate engagement recommendations.

Methods: Planning group review of planning, presentations, and audience discussions from facilitator notes and participant survey data from a one-day conference.

Participatory Technology Development to Enhance Community Resilience.

Objective: To assess the feasibility of a novel, partnered technology development process to co-create mobile health applications (apps) addressing community health priorities, using psychoeducation of cognitive behavioral therapy (CBT) principles for enhancing resilience as an example.

Design: Stakeholder engagement, workgroups, pilot feasibility study using mixed methods during October 2013 through January 2016 over three phases: 1) defining the vision of the project and increasing technical capacity, 2) co-development and pilot testing of the app, and 3) planning for sustainability.

Setting: An academic-community partnership in South Los Angeles, California.

Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study.

By engaging, partnering, and building trust with community members, research on vulnerable populations may offer opportunities to improve population health in communities that suffer from health disparities. While the literature on participatory and partnered approaches offers techniques and strategies for forming community-academic partnerships, less information is available about how partnerships can grow and evolve over time. In this article, we describe the expansion of a long-standing partnership that uses principles of community partnered participatory research (CPPR), a variant of community-based participatory research (CBPR).

Comparative Effectiveness of Coalitions Versus Technical Assistance for Depression Quality Improvement in Persons with Multiple Chronic Conditions.

Significance: Prior research suggests that Community Engagement and Planning (CEP) for coalition support compared with Resources for Services (RS) for program technical assistance to implement depression quality improvement programs improves 6- and 12-month client mental-health related quality of life (MHRQL); however, effects for clients with multiple chronic medical conditions (MCC) are unknown.

Objective: To explore effectiveness of CEP vs RS in MCC and non-MCC subgroups.

Design: Secondary analyses of a cluster-randomized trial.

Commentary: Community Partner Experiences in CPPR: What Participation in Partnered Research Can Mean to Community and Patient Stakeholders.

Community partners and stakeholders currently engaged in community partnered participatory research (CPPR) can provide personal and professional insight into the processes and outcomes surrounding the CPPR model. This insight may indicate alternative solutions or methods of care delivery that can improve the model and existing interventions. We conducted in-person and phone interviews with five community partners who are currently involved in CPPR.

The Community and Patient Partnered Research Network (CPPRN): Application of Patient-Centered Outcomes Research to Promote Behavioral Health Equity.

Objective: We describe the rationale, development, and progress on the Community and Patient Partnered Research Network (CPPRN). The CPPRN builds on more than a decade of partnered work and is designed to promote health equity by developing partnered research on behavioral health and social risk factors in Los Angeles and New Orleans.

Setting: A community-academic partnership across Los Angeles County and New Orleans.

Comparative Effectiveness of Two Models of Depression Services Quality Improvement in Health and Community Sectors.

Objective: The effectiveness of community coalition building and program technical assistance was compared in implementation of collaborative care for depression among health care and community sector clients.

Methods: In under-resourced communities, within 93 programs randomly assigned to coalition building (Community Engagement and Planning) or program technical assistance (Resources for Services) models, 1,018 clients completed surveys at baseline and at six, 12, or 36 months. Regression analysis was used to estimate intervention effects and intervention-by-sector interaction effects on depression, mental health-related quality of life, and community-prioritized outcomes and on services use.

A Community-Partnered, Participatory, Cluster-Randomized Study of Depression Care Quality Improvement: Three-Year Outcomes.

Objective: Community Partners in Care, a community-partnered, cluster-randomized trial with depressed clients from 93 Los Angeles health and community programs, examined the added value of a community coalition approach (Community Engagement and Planning [CEP]) versus individual program technical assistance (Resources for Services [RS]) for implementing depression quality improvement in underserved communities. CEP was more effective than RS in improving mental health-related quality of life, reducing behavioral health hospitalizations, and shifting services toward community-based programs at six months. At 12 months, continued evidence of improvement was found.

Using Stakeholder Input to Inform an Innovative Research and Policy Initiative to Improve Depression in Safety Net Communities.

The Problem: Depression quality improvement programs based on chronic disease management models have been shown to improve depression outcomes. Nonetheless, access to and the use of such programs is limited in minority, under-resourced communities.

Purpose Of Article: We report on the outcomes of a Delphi-based consensus exercise conducted by our partnership at a community-wide conference in Los Angeles.

Dissemination and Implementation of Shared Decision Making Into Clinical Practice: A Research Agenda.

Shared decision making (SDM) is essential to advancing patient-centered care in emergency medicine. Despite many documented benefits of SDM, prior research has demonstrated persistently low levels of patient engagement by clinicians across many disciplines, including emergency medicine. An effective dissemination and implementation (D&I) framework could be used to alter the process of delivering care and to facilitate SDM in routine clinical emergency medicine practice.

Adapting Conceptual Frameworks for Patient Engagement in Emergency Department Research.

For many people the emergency department (ED) is the first point of access to healthcare for acute needs and a recurring location for many with chronic healthcare needs. While the ED is well placed to identify unmet needs it can also be a net that people slip through when faced with uncoordinated and expensive healthcare challenges. Thus the ED has a responsibility to set patients on a safe and meaningful care trajectory, which can only be done in consultation and partnership with the patients themselves.

The Impact of Community Engagement on Health, Social, and Utilization Outcomes in Depressed, Impoverished Populations: Secondary Findings from a Randomized Trial.

Background: Disparities in depression care exist among the poor. Community Partners in Care (CPIC) compared a community coalition model with technical assistance to improve depression services in under-resourced communities. We examine effects on health, social, and utilization outcomes among the poor and, non-poor depressed, and poor subgroups.

Engaging the Community in the Dissemination, Implementation, and Improvement of Health-Related Research.

To help maximize the real-world applicability of available interventions in clinical and community healthcare practice, there has been greater emphasis over the past two decades on engaging local communities in health-related research. While there have been numerous successful community-academic partnered collaborations, there continues to be a need to articulate the common barriers experienced during the evolution of these partnerships, and to provide a roadmap for best practices that engage healthcare providers, patients, families, caregivers, community leaders, healthcare systems, public agencies and academic medical centers. To this end, this paper presents a summary of a forum discussion from the 2014 Southern California Dissemination, Implementation and Improvement (DII) Science Symposium, sponsored by the University of California Los Angeles (UCLA) Clinical Translational Science Institute (CTSI), University of Southern California (USC) CTSI, and Kaiser Permanente.

Community Partners in Care (CPIC): Video Summary of Rationale, Study Approach / Implementation, and Client 6-month Outcomes.

"Community Partners in Care (CPIC): Video Summary of Rationale, Study Approach / Implementation, and Client 6-month Outcomes" is a 2 minute, 46 second video summarizing the study rationale, study approach, and the 6-month outcomes. The video was produced by four agencies: Healthy African American Families II, a health advocacy organization in South Los Angeles; Behavioral Health Services, the largest substance/alcohol abuse service provider in LA County; UCLA; and RAND Health; contract filmmakers Eileen Cabiling and Joe Mango handled cinematography, editing, and video support. The individuals appearing in the video are key CPIC community and academic partners.

Partnering to harmonize IRBs for community-engaged research to reduce health disparities.

Emerging advances in health disparities research include controlled trials and comparative effectiveness studies that are frequently conducted at multiple community and academic sites. Review by different institutional review boards (IRBs) presents a major impediment to the timely and effective conduct of such research. When research involves minority and underserved communities as well as multiple geographic regions, institutional requirements and interpretation of ethical standards may vary substantially.